The CGEN Project: Development, Implementation and Testing of Genetics Education Materials for Use in Community and Clinical Settings National Coalition for Health Professional Education In Genetics Bethesda, MD September 23-24, 2009

What is the Community Genetics Education Network (CGEN) Project? Collaborative agreement between March of Dimes and Health Resources and Services Administration (HRSA) Identify most effective ways to increase genetic literacy among diverse minority populations and determine best practices Uses principles of community-based participatory research Evaluation component for process, implementation, and outcomes Four community partners developing and implementing population-specific genetics education programs

What is the goal of CGEN? Goal: To increase genetic literacy in underserved populations by  Facilitating the use of family health history to identify genetic risks  Enhancing health care decision-making  Encouraging consultation with health care providers  Empowering individuals to address modifiable risk factors  Increasing utilization of genetic services

Who are the partners ? Community Site/Local Evaluator Charles B. Wang Community Health Center/Charles B. Wang Community Health Center Dominican Women’s Development Center/Jesus Sanchez Howard University, Department of Community and Family Medicine/Green Consulting Genetic Science Learning Center at the University of Utah, in partnership with Utah Department of Health’s Chronic Disease Genomics Program/Bach Harrison LLC National Evaluator: Midwest Latino Health Research, Training and Policy Center at the University of Illinois at Chicago

How were the community partners selected? Requirements Conducted local needs assessment Understanding of what and how community would like to learn Connections to and within community and ability to organize a Community Advisory Board

What are the community partners doing? Charles B. Wang Community Health Center 5 Chinese/English brochures 2 Korean/English brochures Workshop curricula to train health educators Genetics education workshops for high risk prenatal patients prior to meeting with Genetic Counselor Dominican Women’s Development Center Training curriculum for Community Health Workers (CHW)/Promotoras Community-Based Genetics Education Workshops Bilingual English and Spanish

Community partners (continued) Howard University Community workshops –2 interactive booklets –Trigger video on family health history Website and toll free number Genetic Science Learning Center with Utah Dept. Of Health 5th grade curriculum materials and take home activities Secondary school materials and take home activities Bilingual English and Spanish Community workshops for Pacific Islanders (Tongans)

How do we know if we’ve achieved our goals? Process and Implementation Evaluation Planning and development, and implementation phases Document extent to which community participation and input is maximized Verify if the program is implemented as planned Ensure program is reaching target audience Outcomes Evaluation Extent to which program participants experience the benefits or changes intended Outcomes may relate to behavior, skills, knowledge, attitudes, values, or other attributes

What have we learned so far about community participatory approaches? Five factors appear to have significantly impacted the degree to which each site engaged community members in planning and development processes: 1.each site’s definition of community; 2.each site’s history of engaging community members in program planning and development, and implementation; 3.each sites expertise in community outreach 4.the goals or purpose of a particular project; 5.dimensions of culture that facilitated or constrained community involvement “Dimensions of culture that facilitated or constrained community involvement included the cultural values, beliefs and practices of the primary community as well as those of the sponsoring organization.” Source: The Midwest Latino Health Research, Training & Policy Center, University of Illinois at Chicago, Process Evaluation: Planning and Development Phase Consumer Genetics Education Network (CGEN) Project: Successes and Challenges, Draft 1/1808

10 What were some of the overall challenges? Variation in experience with partnerships and levels of expertise Participatory process requires long period of time Variation in settings impacted approaches to –Decision-making –Staffing and staff turnover –Use of consultants –Capacities of internal infrastructure to respond and adapt to project demands

11 What were some of the specific site challenges? Scope of deliverables Resources constraints Translation Necessary expertise Staff turnover Crosswalk to organization’s strategic plan

12 What are some elements that contributed to success? Participatory Approach Community Participation Project Oversight/Support –Communication systems –Training –Technical assistance

What are some lessons learned? No one way of conducting CBPR Genetics education requires partnerships with diverse groups at local and national level Requires long term commitment from funding sources and partners Community engagement is continuous and evolving relationship with a bi-directional information exchange Grassroots approach is a method to empower and build capacity in communities High level of communication, trust and collaboration is essential to effectively engage community gatekeepers and stakeholders Community ownership ensures that information gathered reflects their needs

What are our results so far? Preliminary results : Community engagement has occurred Broad based dissemination through a variety of formats has occurred Increased basic knowledge of genetics Understanding the importance of knowing and documenting family health history Intent to Create a family health history Discuss family health history with health provider Adopt healthier behaviors

For more information Diane Gross

Acknowledgements This project is supported by grant U33MC00157 from the Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch. Partners in the Consumer Genetics Education Network (CGEN) include